How to Eat When You’re on 400 Pills a Day
I remember when I first got out of the hospital and trying to navigate the rough road of trying to eat. It just didn’t really work. I tried so many different things, and my family, extended family and friends tried so many different things and tried to help in so many ways. But I was heading down a road of infection and viruses, and nothing sat right (or, as the case too often was, stayed down) for about 6 months. It was brutal.
Getting out of the hospital this time, I thought it might be different. It is different, but the fact is, I am still on heavy doses of 4 different immunosuppressants plus a load of other medications that can’t be helping. I’m not allowed to eat salad in restaurants, and it’s probably not great for me to eat in restaurants anyway. I ran into my surgeon the other day after I went to get bloodwork. I said ‘Hey Sammy! So funny to see you in plainclothes!’ He said ‘How are you? Quickly followed by, how’s your appetite?’ So I told him about my hunger hole (which I don’t think people really understand. I really need a better way to describe it. I get a lot of puzzling looks) and the indigestion and nausea I have most days. It’s all so counterintuitive. I get extremely hungry, I eat, then I feel indigestion and nausea. It’s a vicious cycle and needless to say I’m a delight to be around right now. But I’m eating, and I am not sure if any sort of diet really ‘works’, it’s just a matter of your body acclimatising to the meds and you getting better (my numbers are still not completely under control, and I have been given no timeline for when they might be).
I’ve tried to do the healthy thing: no grains, green vegetable, fish and chicken. I’ve tried just eating soup. I’ve tried just eating saltines. I’ve tried just eating cheese sandwiches. I’ve tried a mix of all of them together. I don’t even really have a taste for chocolate right now which is WILD. So this week I wanted to just throw caution to the wind and say ‘fuck it’ I’m literally just going to eat crackers and cheese for sustenance because what is the point if nothing really makes me feel good. I also fill up SO quickly that I have to eat about 6 or 7 times a day. I’m just at a loss for what the solution is.
A wonderful faraway friend, who is a nutritionist and has great recipes and tips on her website here: Katie 180, suggested I just eat very slow-cooked meals. Porridge for breakfast, stews with slow-cooked beef or lamb for lunch, hard cheeses only with crackers for a snack, and lentil and sweet potato soup for dinner. This all seems pretty easy to wrap your head around, for someone who is well. And I did try to do that for a couple of weeks, but it’s hard when your oven and your stove don’t work and you have to delegate the task of cooking to others when you don’t have the energy. And honestly, this sort of diet, right now, doesn’t work for me because NOTHING seems to work. And I’m not crying wolf: it’s just that nothing really goes down well, I’m not absorbing nutrients, and it’s just a bust in general. It’s another lesson in patience. It’s another lesson in understanding. And it’s a trial and error type thing where hopefully, some days are better than others and we can all forget this period in our lives where I lost steam on the cooking front in a matter of minutes and when I did eat it was literally just for sustenance. Because god knows, I love to eat and if I could think about one thing all day long, it would be what I was eating next.
I moved to the country with my mother for a while at the beginning of June to heal in nature and stay in a house with a working oven (score!) and I started strong with the cooking. But I just never know what my day will look like. So, on the days I feel good and can cook I try to make things like this:
And on the days I don’t feel so good, I eat more like this:
